Parental evaluation of processes of care in relation to the child, parent and family characteristics.

220 Original article

Parental evaluation of processes of care in relation to the child, parent and family characteristics Katja Groleger Sršena, Gaj Vidmara, Gregor Socˇanb and Anton Zupana The Measure of Processes of Care (MPOC) is a questionnaire for parents used to evaluate the behaviours of healthcare providers. We applied its 20-item version (MPOC-20) to explore the associations between parental evaluation of processes of care and child, parent and family characteristics in Slovenia. A novelty of our approach was the emphasis on the role of a key person. Parents of 235 children who were admitted as inpatients or outpatients of six institutions (hospitals and health centres) because of chronic illness or disability participated in the study. Parents were asked to fill in a general questionnaire on several characteristics of the child, child’s health problems, the family and the therapy programmes, and MPOC-20. Univariate associations of the five MPOC-20 scale scores with child, parent and family characteristics were tested first. Multiple linear regression was used for modelling scale scores in relation to child, parent and family characteristics. The analyses singled out availability of a key person as the factor most consistently and unequivocally influencing parental satisfaction. We also found a general positive effect

Introduction It is well known that children with chronic health conditions and their parents are at an increased risk for social and mental health problems. Parents experience increased stress and burden; mothers in particular have significantly more emotional and even psychiatric problems, which correlate with the level of the child’s disability (Breslau et al., 1982; Romans-Clarkson et al., 1986; Cadman et al., 1987; Jessop et al., 1988; Gortmaker et al., 1990; Cadman et al., 1991; Pless et al., 1993). However, some parents and children do not experience negative effects, are well adapted to the situation and function well as a family despite the chronic illness (Gowen, 1989; Query et al., 1990; Dyson, 1991; Barakat and Linney, 1992; Nelson et al., 1992; Tunali and Power, 1993). Several factors that contribute towards the development of psychosocial problems have been identified, comprising child’s characteristics, individual parent characteristics, characteristics of the families and aspects of available family services. An important aim of such research is to define and understand the content and style of care-giving (Rosenbaum et al., 1992). Parents have reported in several studies that understanding, warmth, sincerity, sympathy and continuity of care are emblematic of healthcare providers and services that are highly appreciated (Pless and Satterwaite, 1972; Breslau and Mortimer, 1981; Breslau, 1982). They also reported 0342-5282 © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins

of male sex of the child on the MPOC-20 scores. Neither the present age of children nor age at the onset of health problems was found to be associated with MPOC-20 scores. We found no notable association of the number of health problems with the MPOC-20 scores, but observed clear differences when comparing parental satisfaction with processes of care between different participating institutions. International Journal of Rehabilitation Research 37:220–228 © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. International Journal of Rehabilitation Research 2014, 37:220–228 Keywords: children, chronic illness, evaluation, family characteristics, parents a

University Rehabilitation Institute and bDepartment of Psychology, Faculty of Arts, University of Ljubljana, Ljubljana, Slovenia Correspondence to Gaj Vidmar, PhD, University Rehabilitation Institute, Republic of Slovenia, Linhartova 51, SI-1000 Ljubljana, Slovenia Tel: +386 1 4758440; fax: +386 1 4376589; e-mail: [email protected] Received 9 April 2014 Accepted 26 May 2014

the desire to have a care coordinator (Beresford, 1995), to be involved in individual programme planning for their child (Stallard and Hutchison, 1995) and to receive written reports on their child (McConachie et al., 1988). The Measure of Processes of Care (MPOC), which exists in a longer (MPOC-56) and a shorter version (MPOC-20), was developed as a self-administered questionnaire for parents so that they would be able to report on the behaviours of healthcare providers (King et al., 1995). It includes items related to important aspects of care that are closely related to satisfaction of parents. The instrument has been proven to be reliable and valid (King et al., 1995) and it is used worldwide (Granat et al., 2002; McConachie and Logan, 2003; Bjerre et al., 2004; Dyke et al., 2006; Siebes et al., 2006; Siebes et al., 2007; Cunningham and Rosenbaum, 2014). Our study was based on the Slovenian translation of the 20-item version, for which basic psychometric characteristics have been evaluated (Groleger Sršen et al., in preparation). In the process of development of the original MPOC-56, King et al. (1995) posited that some factors would not have a significant impact on results – type of community (major urban, small urban, rural), family type (singleparent family, two-parent family), family income, educational level of parents and child’s sex. This has been largely confirmed through subsequent data analyses. DOI: 10.1097/MRR.0000000000000068

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Parental evaluation of processes of care Groleger Sršen et al. 221

King et al. (1995) also predicted that some other factors would be important, such as the age of the child, the number of health or developmental problems and the number of services/therapies received. King et al. (1996) actually found higher MPOC-56 scores (showing higher quality of processes of care) on three scales (Enabling and Partnership, Providing General Information and Coordinated and Comprehensive Care) with younger children and attributed this to the younger children receiving services more frequently than older children. Higher scores had also been predicted on the Providing General Information and Coordinated and Comprehensive Care scales for children with fewer health or developmental problems and for children receiving fewer services. The rationale for such predictions was that it is easier to provide information and to coordinate work when the needs of a child are less complex. Subsequent results confirmed the first conjecture, whereas the MPOC-56 scores were not found to be significantly related to the number of required services (King et al., 1996). Other authors have also reported on the factors influencing parental satisfaction, such as community type (Raghavendra et al., 2007; Árnadóttir and Egilson, 2012) and child’s age (Árnadóttir and Egilson, 2012). The role of the key person (sometimes called key worker) has been highlighted recently in relation to parental satisfaction with processes of care for their children. As Drennan et al. (2005, pp. 1–2) summarized, ‘the main concept of the key worker’s role is to empower parents by providing them with support, resources and information tailored to meet their individual needs. The professions most frequently described in the literature that are employed in key worker positions are social workers and nurses from a variety of practice areas. Occupational therapists, physiotherapists, psychologists and teachers are the next most frequently mentioned professionals who take on this role.’ Beresford (1995) reported that availability of key worker may not alleviate problems that parents experience with services as these often arise from interagency collaboration. This was later supported by the finding of MacDonald et al. (1994) that some key workers are not satisfied and feel frustrated as they are not able to overcome these problems utilizing their skills and expertise. However, McConachie and Logan (2003) found that parents who reported to have a care coordinator were generally more satisfied with processes of care than those who did not. Nevertheless, the same authors suggest caution in interpretation of these findings because the results did not imply that the services involved were operating an acknowledged ‘key worker’ system (McConachie and Logan, 2003). We aimed to explore the associations of parental evaluations of processes of care (expressed through the MPOC-20) with child, parent and family characteristics within the Slovenian cultural context, with a particular

emphasis on the role of a key person (if existing) in shaping the parental evaluation of processes of care.

Materials and methods Parents of children who were admitted as inpatients or outpatients to one of the seven participating Slovenian institutions (University Rehabilitation Institute in Ljubljana, Gastroenterology Department of the Paediatric Clinic of the University Medical Centre in Ljubljana, the Children’s Department of the Franc Derganc General Hospital in Nova Gorica, Community Health Centres Domžale, Ljubljana Moste and Novo mesto, and Rehabilitation Centre for Children with Neuromuscular Diseases in Izola) in the year 2011 were invited to participate. All parents were asked to answer a questionnaire about the child (including type and number of health problems, problems with functioning – see Table 1, number of presently prescribed medications, specialists being visited and how often, and participation in intervention programmes), the parents and the family (including who filled in the questionnaire, number of children in the family, educational level of the mother and of the father, who is taking part in the care of the child, presence of a key person and information resource seeking). In addition, all the parents filled in the MPOC-20. As already noted, the MPOC was developed as a selfadministered questionnaire for parents with the aim to enable them to report on behaviours of healthcare providers that other parents had previously identified as core indicators of valued issues (King et al., 1995). The MPOC-20 consists of 20 items divided into five subscales: (1) (2) (3) (4) (5)

Enabling and Partnership (EP), Providing General Information (PGI), Providing Specific Information about the Child (PSI), Coordinated and Comprehensive Care (CCC) and Respectful and Supportive Care (RS).

The items are either answered on a seven-point scale (ranging from 7, meaning ‘to a very great extent’, to 1, Table 1

Reported functional activity problems (several possible)

Functional activity

Number of reported problems

Proportion of reported problems (of total 760) (%)

Proportion of children (%)

Dressing Outdoor mobility Indoor mobility Washing Eating Speech Learning Understanding Play Other

118 109 88 85 71 69 62 48 45 65

15.5 14.3 11.6 11.2 9.3 9.1 8.2 6.3 5.9 8.5

59.6 55.1 44.4 42.9 35.9 34.8 31.3 24.2 22.7 32.9


222 International Journal of Rehabilitation Research 2014, Vol 37 No 3

meaning ‘not at all’) or marked as not applicable. A higher score therefore reflects a more favourable judgement of the care process (King et al., 1995). Because of the ‘not applicable’ option, and to accommodate for the possibility of missing data, scale scores are expressed on the 1–7 scale (i.e. as mean scores of the corresponding items). In addition, an overall score was calculated for each participant as the mean of standardized scale scores (i.e. the mean of five z-values obtained from the five scales) for further analyses as a simplistic analogy to O’Brien’s test (O’Brien, 1984; Dallow et al., 2008). The Slovenian translation of the MPOC-20 was prepared in accordance with the recommendations for transferring a test into a new language and cultural setting (Groleger Sršen et al., in preparation). Its psychometric assessment was favourable: concurrent validity was confirmed as all the scale scores correlated positively with Client Satisfaction Questionnaire scores and negatively with the rated effect of institutional care in the last year (whereby lower scores meant alleviation and higher scores meant elevation of stress and worries); internal consistency reliability was confirmed as Cronbach’s α values for the scales ranged from 0.84 to 0.91 and corrected item-scale correlations ranged from 0.54 to 0.81. Stability was confirmed as after 1 year, none of the mean subscale scores changed statistically significantly (Groleger Sršen et al., in preparation). In the statistical analysis, univariate associations of MPOC-20 scale scores with child, parent and family characteristics were tested first. Independent-samples ttest, the Mann–Whitney U-test (exact version), one-way ANOVA and the Kruskal–Wallis test (exact version) were used to test the associations with categorical variables; Pearson’s and Spearman’s correlation were used for numerical variables. For selected dichotomous factors, we estimated effect size using Cohen’s d. Multiple linear regression was used for modelling scale scores (and the overall mean standardized score) as depending on child, parent and family characteristics. The predictors in the models were selected on the basis of the univariate analyses, substantial criteria (representation of all domains – characteristics of the child, his/ her health problems, the care processes and the family) and associations between the potential predictors (to avoid collinearity; as detailed in the Results section). Statistical analyses were carried out using IBM SPSS Statistics for Windows Version 20 software (IBM Corp., Armonk, New York, USA). The statistical significance threshold was set at P less than or equal to 0.05. The study was approved by the National Medical Ethics Committee of the Republic of Slovenia (motion no. 45/12/10 from 14 December 2010).

Results Parents of 235 children (52.2% of the 450 invited) participated in the study; mothers filled in the questionnaire

in 80.0% of the cases (both parents in 10.9%, fathers in 9.1%). The proportion of missing data was negligible [228 (97.0%) questionnaires and MPOC-20’s were fully completed]. Parents reported quite a high level of satisfaction with the processes of care as the mean scores were high (with a mean above five points) on all the MPOC-20 scales, except PGI [the mean scores were 5.83 (SD 1.10) for CCC, 5.62 (SD 1.12) for RS, 5.45 (SD 1.23) for EP, 5.33 (SD 1.61) for PSI and 4.59 (SD 1.65) for PGI; Groleger Sršen et al., in preparation]. The mean age of children at the time of the study was 6.8 years (SD 5.0, median 5.4, range 0.3–23.0 years); 55.5% of the children were boys. Almost two-thirds of the parents (61.6%) reported their children to have chronic illness or disability from birth or since the age of less than 6 months (the latest onset was at the age of 18 years). The observed mean scores were higher for parents of boys on all the MPOC-20 scales, but the difference between child sexes was statistically significant only on the PGI scale (parents of boys: mean 4.79, SD 1.54; parents of girls: mean 4.30, SD 1.77; Pt-test = 0.030, PMann-Whitney = 0.046; P from 0.055 for EF to 0.415 for CCC scale). Neither the present age of children nor age at the onset of health problems was associated with MPOC-20 scale scores (absolute values of r ranged from 0.000 to 0.096, P from 0.163 to 0.997). Children were referred to the health centres or hospitals for different reported health problems, the prevailing ones being developmental delay (36.8%) and cerebral palsy (32.5%; Groleger Sršen et al., in preparation). Majority of parents reported their child having one health problem or diagnosis (62.8%); some reported their child having two (17.1%), three (12.0%), four or more (8.1%) health problems or diagnoses. The parents also reported on their children having several different problems in daily functioning, the most frequent being mobility issues (Table 1). One-quarter (25.4%) of the children were reportedly not taking any prescribed drugs, 26.8% were reported to be taking one, 18.3% two and the remaining 29.6% were reported to be taking from three up to seven different prescribed drugs. They were referred to and followed by several different specialist physicians – most frequently a neurologist (46.4%), a physical and rehabilitation medicine specialist (15.8%) or a paediatrician in an outpatient unit for children with developmental problems (11.7%). Nearly four-fifths (79.6%) of the children had been included in treatment or rehabilitation programmes for at least 1 year at the time of the study; however, only 16.5% reported the child as receiving regular therapy programme once a week (the most frequent response, in 36.7%, was several times a year). Over four-fifths of the children were included in physiotherapy programmes (81.5%), over one-half in



occupational therapy (63.0%) and nearly one-half in speech therapy (46.0%). The parents also reported their children to be undergoing hydrotherapy, behavioural therapy or psychological counselling, or visiting a special education teacher (14.3, 8.5, 2.1, 0.5 and 0.5%, respectively). An approximately equal proportion of the children were included in one therapy programme (31.2%), two different (29.6%) or three different therapy programmes (29.6%); the remaining 9.6% of the children were receiving four or five different therapy programmes. There was a weak negative correlation of EP subscale scores with the reported number of health problems (Spearman’s ρ = − 0.152, P = 0.021). However, because 35 potential associations of parental satisfaction (five MPOC-20 scales) with severity of child’s health problems (seven measures – number of health problems, number of functioning problems, number of different medications being taken, number of yearly visits at healthcare specialists, time from the onset of the intervention programme, frequency of attending the intervention programme and number of different intervention programmes that the child is attending) were tested, a correction for multiple testing is undoubtedly warranted, rendering this observed association (and all others, which were even weaker) negligible. Almost all the children (92.2%) lived with both parents, and both were involved in the care for child in 73.9% of the families. In only 27.4% of families grandparents were also involved. The large majority of the families had one (31.3%) or two children (50.0%). Mothers had a somewhat higher educational level than fathers (77 vs. 65% finished high school, college or had a higher degree). Nearly half of the parents searched for information on the Internet (46.9%), a similar proportion obtained information from the paediatrician (42.5%) and/or the developmental paediatrician (40.8%), nearly as many obtained information from other parents (38.6%) and about one third from the physical and rehabilitation medicine specialist (33.8%). One consulted information source was reported by 23.2% of the parents, two by 21.1% and the remaining 55.8% of the parents consulted three or more different information sources. None of the family characteristics was statistically significantly associated with any MPOC-20 scale score (all P values were > 0.2 even without any correction for multiple testing; details omitted for brevity and available from the authors). Fewer than half of the parents reported having a key person available (43.5%). In most of those cases, paediatricians were recognized as the key person (69.6%), followed by developmental paediatricians (13.0%). We observed higher mean MPOC-20 scale scores with the parents who reported to have a key person available than with those who did not (Table 2). The effect size was the largest on the RS subscale; it was of medium size

according to Cohen’s (1988) taxonomy, whereas for other scales it was small (Table 2). We found significant differences when comparing parental satisfaction with processes of care for different participating institutions (Table 3). These comparisons are provided merely for illustrative purposes because they do not take into account child (and family) characteristics, which are different for children referred to different institutions. Hence, the adjusted comparisons from the regression models reported below are more relevant. When estimating the regression models, we used the same set of predictors in all the models to facilitate comparison and interpretation. The predictors were selected on the basis of the univariate analyses reported above while observing the substantial criterion of including predictors from all four domains (i.e. characteristics of the child’s, his/her health problems, the reported care processes and the family). We also took into account the correlation between the potential predictors (details omitted for brevity and available from the authors). The resulting models showed no problems with collinearity (no variance inflation factor exceed 1.3). Diagnostic graphics (normal probability plots of residuals, plots of standardized residuals vs. standardized predicted value) showed no notable departure from the model assumptions (of normally distributed residuals and homoscedasticity). All the models were statistically significantly better than the null model; they explained an estimated 5–13% of the population variance of the dependent variable (Table 4). The number of outlying data points with high residual absolute value was negligible. The Durbin–Watson statistics indicated that the assumption of independent observations was fulfilled. The presence of a key person was a statistically significant predictor of higher scores on all the scales (Table 5). On all the scales except CCC, male sex was a statistically significant predictor of higher scores. Longer duration of therapy programme was a statistically significant predictor of lower scores on the EP, CCC and RS scales (as well as of the average standardized score). Higher level of father’s education was a statistically significant predictor of the PGI score (Table 5). As already noted, comparisons between participating institutions adjusted for child and family characteristics provide a more realistic assessment of the impact of the characteristics of the care processes on parental evaluation than the univariate tests. The University Rehabilitation Institute (URI), being the largest participating institution, was chosen as the baseline category for comparisons in the regression models. On all scales, the Rehabilitation Centre for Children with Neuromuscular Diseases in Izola showed statistically significantly lower scores than the URI. The parents of children treated at the Franc Derganc General Hospital in Nova Gorica



Table 2

Differences in the mean MPOC-20 scales scores with respect to the presence of a key person Key person [mean (SD)]

MPOC scale

Not available

EP PGI PSI CCC RS

5.27 4.33 5.16 5.67 5.43

Available

(1.35) (1.64) (1.68) (1.22) (1.21)

5.69 4.86 5.57 6.06 5.87

(1.04) (1.64) (1.48) (0.91) (0.95)

P (t-test)

P (Mann–Whitney)

Cohen’s d

0.012 0.025 0.070 0.008 0.004

0.033 0.023 0.074 0.025 0.010

0.35 0.32 0.26 0.36 0.40

Measure of Processes of Care (MPOC) scales: CCC, Coordinated and Comprehensive Care for Child and Family; EP, Enabling and Partnership; PGI, Providing General Information; PSI, Providing Specific Information about the Child; RS, Respectful and Supportive Care.

Table 3

Comparisons of the mean MPOC-20 scale scores between different institutions Institution [mean (SD)]

MPOC-20 scale EP PGI PSI CCC RS Mean z-value Mean rank

URI

PC

FDH

CHC

RCN

P (ANOVA)

P (Kruskal–Wallis)

5.33 (1.24) 4.59 (1.65) 5.40 (1.43) 5.88 (1.09) 5.60 (1.09) − 0.01 3.4

5.73 (1.20) 4.83 (1.66) 5.75 (1.26) 5.67 (1.02) 5.65 (1.19) 0.09 2.2

5.86 (1.00) 4.61 (1.70) 5.62 (1.66) 6.23 (0.89) 6.06 (0.94) 0.25 1.2

5.40 (1.22) 4.67 (1.57) 4.72 (2.06) 5.92 (1.00) 5.53 (1.04) − 0.07 3.2

4.54 (1.36) 3.76 (1.62) 4.37 (1.75) 4.81 (1.49) 4.71 (1.30) − 0.74 5.0

0.001 0.321 0.018 0.004 0.001

0.001 0.366 0.013 0.001 0.001

Measure of Processes of Care version 20 (MPOC-20) scales: CCC, Coordinated and Comprehensive Care for Child and Family; EP, Enabling and Partnership; PGI, Providing General Information; PSI, Providing Specific Information about the Child; RS, Respectful and Supportive Care. Institutions: CHC, Community Healthcare Centres (Domžale, Ljubljana Moste and Novo mesto combined); FDH, Franc Derganc General Hospital in Nova Gorica; PC, Gastroenterology Department of the Paediatric Clinic in Ljubljana; RCN, Rehabilitation Centre for Children with Neuromuscular Diseases in Izola; URI, University Rehabilitation Institute in Ljubljana.

Summary of multiple linear regression models for predicting MPOC-20 scale scores and average standardized score

Table 4

Dependent variables EP PGI PSI CCC RS Average zscore

P (ANOVA)

Adjusted R2

Durbin–Watson statistic

Number of standardized residuals < − 3 or > 3

< 0.001 0.025 0.008 < 0.001 < 0.001 < 0.001

0.127 0.054 0.070 0.119 0.131 0.121

2.277 1.850 2.078 2.166 2.119 2.152

1 0 1 2 1 0

The upper critical value of the Durbin–Watson statistic, above which the null hypothesis of lack of serial correlation can be retained beyond reasonable doubt, is 1.896 for 11 predictors and > 200 cases. Measure of Processes of Care version 20 (MPOC-20) scales: CCC, Coordinated and Comprehensive Care for Child and Family; EP, Enabling and Partnership; PGI, Providing General Information; PSI, Providing Specific Information about the Child; RS, Respectful and Supportive Care.

scored higher on the EP and RS scales compared with the URI. The community health centres showed lower adjusted scores on the PSI scale, whereas there were no statistically significant differences between the Gastroenterology Department of the Paediatric Clinic in Ljubljana and the URI (Table 5).

Discussion In this study, the associations of the parental evaluation of processes of care with the child, parent and family characteristics were explored in Slovenia. The analyses singled out availability of a key person as the factor that

most consistently and unequivocally influenced parental experience as measured by the MPOC-20. The importance of this factor was apparent in the univariate analyses and even more so in the regression model. As already mentioned, previous research indicated that the key person is usually a social worker, nurse or some other professional, but rarely a medical doctor (Drennan et al., 2005). Fewer than half the parents in our study reported having a key person. Surprisingly, most of them identified a paediatrician or a developmental paediatrician as a key person. This might be reflected in increased PSI scale scores, although specific information about the child was also available to the parents who did not identify a paediatrician as a key person. In terms of Beresford’s (1995) observation that availability of a key worker may not alleviate problems that parents experience with services because these are often because of (lack of) interagency collaboration, we can state that in our country, paediatricians in the role of key workers are quite able to support parents during interagency collaborations, especially in terms of visiting other professionals and inclusion in various therapy programmes. According to McConachie and Logan (2003), parents who reported that they had a care coordinator (42.3%) generally gave higher ratings on the MPOC factors than those who did not. That study did not explicitly identify who care coordinators were, but precise criteria for key worker services were published soon afterwards (Greco et al., 2005; Sloper et al., 2006): (a) induction and on-going training for all key workers; (b) on-going, regular


− 0.016 0.817 0.195 − 0.197 0.076 − 0.143

− 0.058 0.252

0.622 0.235 − 0.938 0.335 0.235 0.233 − 0.184 0.089

0.043 0.518

0.051 0.466

0.037

0.050

− 0.105 0.124

0.095

0.121 0.187

0.017

− 0.147

0.163

0.169

0.405

0.009 0.006 0.315 0.040

0.133

0.236

0.040 0.070

− 0.045 0.260

− 0.294

0.610

0.352 0.328 0.467 0.325 0.124

− 0.021 − 0.952 0.220 − 0.140

0.116

0.233

SE (B)

− 0.017

0.002

− 0.519

B

β 0.027

P

0.028

− 0.157

0.042 0.565

− 0.012 0.864

0.010

0.949 0.043 0.500 0.260

0.183

− 0.005 − 0.150 0.053 − 0.081

− 0.004 0.961

0.001 0.985

− 0.156

PGI

0.226

SE (B)

0.341

0.128

0.228

0.058 0.068

− 0.010 0.252

0.078

0.450

0.283 0.317 − 1.066 0.452 0.177 0.315 − 0.183 0.120

− 0.814

− 0.156 0.112

− 0.458

B

β

0.018

0.167

0.044

P

0.050

0.969

0.061 0.394

− 0.003

0.043 0.543

0.139

0.068 0.373 − 0.172 0.019 0.044 0.575 − 0.109 0.129

− 0.176

− 0.100

− 0.141

PSI

0.086

0.152

0.211 0.302 0.210 0.080

0.227

0.075

0.151

SE (B)

0.070

0.045

0.086 0.168

− 0.119

0.329

0.394 − 1.120 − 0.283 − 0.194

− 0.054

− 0.051

− 0.242

B

β

0.108

0.034

− 0.095

0.148

0.138 − 0.263 − 0.103 − 0.169

− 0.017

− 0.048

− 0.109

CCC

0.123

0.609

0.167

0.032

0.064 < 0.001 0.179 0.016

0.813

0.492

0.110

P 0.153

SE (B)

0.154

0.214 0.306 0.213 0.081

0.059 0.046

− 0.103 0.170

− 0.104 0.087

0.426

0.510 − 0.957 − 0.085 − 0.208

− 0.181 0.230

− 0.128 0.076

− 0.350

B

RS

0.006

0.018 0.002 0.691 0.011

0.433

0.094

0.023

P

0.089 0.198

− 0.040 0.546

− 0.081 0.233

0.188

0.175 − 0.220 − 0.030 − 0.177

− 0.056

− 0.117

− 0.154

β

0.059

0.118

SE (B)

0.119

0.043 0.036

0.020 0.132

− 0.092 0.067

0.331

0.294 0.166 − 0.796 0.237 0.018 0.165 − 0.141 0.063

− 0.148 0.178

− 0.075

− 0.290

B

0.198

0.546

0.233

0.006

0.018 0.002 0.691 0.011

0.433

0.094

0.023

β

Average z-score

P

0.231

0.882

0.174

0.006

0.079 < 0.001 0.911 0.026

0.409

0.202

0.015

Statistically significant predictors are given in bold. Measure of Processes of Care version 20 (MPOC-20) scales: CCC, Coordinated and Comprehensive Care for Child and Family; EP, Enabling and Partnership; PGI, Providing General Information; PSI, Providing Specific Information about the Child; RS, Respectful and Supportive Care. Institutions: CHC, Community Healthcare Centres (Domžale, Ljubljana Moste and Novo mesto combined); FDH, Franc Derganc General Hospital in Nova Gorica; PC, Gastroenterology Department of the Paediatric Clinic in Ljubljana; RCN, Rehabilitation Centre for Children with Neuromuscular Diseases in Izola; URI, University Rehabilitation Institute in Ljubljana. B, regression coefficient; SE(B), standard error of B; β, standardized regression coefficient.

Family characteristics

Processes of care

− 0.133 0.058

− 0.158 0.083

0.012

Number of reported health problems Institution CHC vs. URI FDH vs. URI RCN vs. URI PC vs. URI Duration of therapy programme (1–4) Key person (yes vs. no) Father’s education (1–4) Both parents partake in care (yes vs. no) Number of information sources consulted

− 0.171

0.167

− 0.424

P

Child’s sex (girl vs. boy)

β

SE (B)

B

Independent variables

EP

Dependent variable

Parameter estimates from the multiple linear regression models for predicting MPOC-20 scale scores and average standardized score

Child’s characteristics and health problems

Table 5




supervision specific to key working for all key workers; (c) peer support with other key workers; (d) some dedicated funding for the scheme; (e) a dedicated service manager who runs the scheme, organizes training and supervision for key workers, and whom they can approach for support; (f) parental involvement in the steering group; (g) a clear, written, job description for all key workers; and (h) designated or nondesignated key workers.

disabilities in a different way than boys and hence might also be less satisfied with the processes of care for the girls (Weiss, 1994). Neither present age of children nor age at the onset of health problems was found to be associated with MPOC-20 scores in our study. This is in agreement with the findings of King et al. (2004) from the MPOC-20 survey, but differs from those obtained by King et al. (1996) for the MPOC-56, where higher scores on EP, PGI and CCC scales were reported with younger children (presumably because they receive services more frequently than older children). Bjerre et al. (2004) also reported on a significant negative association of child’s age with MPOC-56 scores, suggesting the explanation that interventions in Sweden in the period preceding that study had primarily been directed towards early treatment and hence proportionally more resources given to preschool children than to school children. It may be that MPOC-56 is more sensitive than MPOC-20, even though King et al. (2004) reported the MPOC-20 to have comparable psychometric properties to the MPOC-56. However, our regression analyses did show that longer duration of the therapy programmes (which can hardly be separated statistically from the children being older) is associated with lower scores on the EP, CCC and RS scales of the MPOC-20. This might be in agreement with the results reported by Árnadóttir and Egilson (2012), who found higher satisfaction with PGI for parents of children younger than 10 years.

Such a formal network of key workers is not available in Slovenia. Traditionally, paediatricians are designated to organize all processes of care, referrals to other specialists and team members. Developmental paediatricians work within a team of professionals at the secondary level (with a physiotherapist, occupational therapist, speech therapist, social worker and psychologist, the latter two being shared with the paediatric network for healthy children at the primary level). Paediatricians are also involved in supporting inclusion of children with chronic illness or disability in mainstream kindergartens or schools when appropriate, or special care programmes and adapted school programmes (through committees of the National Education Institute of the Republic of Slovenia, which is part of the ministry in charge of education). In this way, coordination of all the services is quite smooth, which is most probably reflected in the high mean scores on the CCC scale (Groleger Sršen et al., in preparation). We found the largest positive effect of the presence of a key person on the RS scale, which refers to enabling parents to feel competent in their parental role, providing a caring atmosphere, providing enough time to talk with service providers and parents being treated as equal individuals (King et al., 1995). On the basis of our results, we might suggest improving the existing system in our country by providing some additional education programmes for paediatricians and engagement in regular supervision specific to key working. The introduction of a dedicated service manager who would run the scheme and organize training and supervision might also be beneficial, although it is probably not realistic in the present economic situation.

We found no notable association of the number of health problems with MPOC-20 scores. King et al. (1995) reported on a significant negative correlation between the number of health problems and the CCC score, but the magnitude of the correlation was small and they recognized that the statistical significance of nonzero correlation was most probably because of the very large sample size (n = 653). Furthermore, McConachie and Logan (2003) found no significant relationships of MPOC ratings with either the child’s diagnosis or the number of child’s disabilities reported by the parents.

In addition to the key person, we found a general positive effect of male sex of the child on the MPOC-20 scores (except perhaps on the CCC scale). This result differs from King et al. (2004), who reported that child’s sex was not significantly correlated with satisfaction of parents. Neither Árnadóttir and Egilson (2012) nor Bjerre et al. (2004) evaluated the possible impact of sex on MPOC scores. We can speculate that a possible explanation might be parental expectations of the appearance of their children. Weiss, an Israeli social anthropologist, reported extensively about parents’ attitudes towards children with disabilities and the influence of the children’s appearance (being beautiful is fortunate). We can assume that girls are generally more expected to be beautiful than boys; thus, parents might accept girls with

We found no notable association of the number of health problems with any MPOC-20 subscales scores in univariate tests, which is in agreement with the findings of King et al. (2004). For single-parent versus two-parent families and educational level of the parents, our sample was quite similar to the one reported by King et al. (2004), including the fact that the vast majority of respondents were mothers. However, our regression model highlighted father’s education as a significant independent predictor of the PGI score. McConachie and Logan (2003) reported that father’s occupation (which presumably correlates with education level) was significantly related to the factor of Good Communication with the Family in the MPOC-UK version; thus, this issue deserves to be explored further.



We found clear differences when comparing parental experience with processes of care between different participating institutions. The differences can be explained by the varied roles of these institutions in the national healthcare system. The URI and the gastroenterology department of the Paediatric Clinic are tertiary institutions, and children referred to them usually have more complex health problems. In the context of family-centred services, both institutions might be more prone to act in a professionally centred way than in a family-focused or even a family-centred way; hence, parents reported somewhat lower scores on the EP and RS scales for these two institutions. However, the department for children at the general hospital in Nova Gorica is smaller and the children are mostly referred there from the local region; thus, the department can be more family focused or centred in the processes of care. The lower scores for the rehabilitation centre in Izola (which is at the seaside) may not be unexpected because children usually go there only for summer vacation and only a physician, a nurse and a physiotherapist are available there for the family. The lower scores for the community health centres for PSI could also be expected because children with complex health disorders are regularly referred from there to tertiary-level institutions (such as the URI or the paediatric clinic in Ljubljana). Generally, our results are in agreement with previous research. MPOC-56 was reported to discriminate among various programmes of service that were known to operate differently (King et al., 1995, 1996). Bjerre et al. (2004) also found significant differences in PGI and PSI (MPOC-56) scores across four rehabilitation centres in Sweden that were of different sizes and had a different number of children in their registers. Moreover, King et al. (2004) confirmed the ability of the MPOC-20 to discriminate between different services, whereby significant differences were found on EP, CCC and RS scales when comparing six rehabilitation centres. The limitations of our study arise from the response rate and from the statistical methodology. As elaborated in the preceding study (Groleger Sršen et al., in preparation), we could not assess the potential nonresponse bias, but the response rate and sample size were sufficient to ensure validity according to the recommendations for patient satisfaction measurement (Barkley and Furse, 1996) and it was comparable to closely related studies (Bjerre et al., 2004; Siebes et al., 2007; Árnadóttir and Egilson, 2012; Hagen and Bjorbackmo, 2012). In the regression models, the proportion of explained variance is rather low, but the purpose of the models was group-level exploration and explanation, not precise individual-level prediction. The nesting of the parents within the participating institutions might call for mixed (i.e. multilevel) modelling, but the almost negligible serial correlations and very low intraclass correlations (intraclass correlation values ranged from 0.000 to 0.158) indicate that including the

institution as fixed factors in regression models is justifiable. Such a solution is also considerably grounded because the included institutions represent practically all the possible healthcare institutions (of all the available types) for children with chronic illness or disability in Slovenia. Nevertheless, refinement of the statistical models (preferably using structural equation modelling) remains a task for future research. Conclusion

Our study singled out availability of a key person as the factor most consistently and unequivocally influencing parental experience measured by the MPOC-20. Because a formal network of key workers is not available in Slovenia, we could suggest improving the existing system in our country by providing some additional education programmes for paediatricians and engagement in regular supervision specific to key working. We also confirmed some previously identified factors, such as longer duration of therapy programmes and the participating institution. In addition, our regression model highlighted father’s education as a significant independent predictor of the score on the PGI scale, which could be explored in future studies.

Acknowledgements The authors are grateful to the staff of all the participating healthcare institutions and all the families who participated in the study. The project was supported by a grant from the Slovenian Research Agency (L3-3649). Conflicts of interest

There are no conflicts of interest.

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